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Aiding Parkinson's Research: BR Woman Finds Support in Trials

BATON ROUGE- At a local coffee shop, Carol Harrison accidentally drops her personal planner, and papers scatter across the floor.

“That’s how my life is,” she said cheerfully, picking up the pages. “But I put it back together.”

It’s not a bad philosophy.

When Harrison learned in 2003 at the age of 57 that she has Parkinson’s disease, a chronic and progressive movement disorder, one way she tried to make sense of it was to get immediately involved in a Yale-based research trial.

This past fall, she was also one of 40 persons in the country living with Parkinson’s to be accepted into the third annual Clinical Research Learning Institute of the Parkinson’s Disease Foundation.

Over three days in October, at the training program held in New Jersey, Harrison and others learned about the science of Parkinson’s and how they might be able to influence decisions regarding research.

“I want to be able to talk to people about the importance of being involved with research. That’s where the answers are,” Harrison said.

“I see myself as planting seeds about how important it is to have people with Parkinson’s participate in clinical trials,” she said.

Harrison said that an additional benefit of the three-day training program was to be with “39 other people who walked like you, talked like you, knew you had Parkinson’s.”

Currently it’s unknown what brings on Parkinson’s. There is no cure, although there are treatments to manage the symptoms, which vary from person to person.

The disease causes a progressive impairment of nerve cells in the brain that make a chemical called dopamine, according to several medical websites.

Without sufficient dopamine, those with Parkinson’s might develop “tremor, slowness of movements, limb stiffness and difficulties with gait and balance,” according to the Parkinson’s Disease Foundation.

There might also be fatigue, difficulty swallowing and speech problems. Non-motor symptoms can include sleep disturbances, memory difficulties and depression.

Harrison, who has two grown children, five granddaughters and one great-grandson, said she doesn’t try to look too far into the future.

“I have a progressive disease. If I look at my future, it’s not a bright future,” she said.

By living more in the present, “there’s that whole peace about ‘I’m living with Parkinson’s, not dying with Parkinson’s,’” Harrison said.

Three years ago the Parkinson’s Disease Foundation launched its grassroots efforts on behalf of research, with now more than 100 graduates of its Clinical Research Learning Institute.

Research for the disease has also received a powerful boost from the efforts of actor Michael J. Fox, who was diagnosed with Parkinson’s in 1991.

His foundation has funded millions of dollars in research.

Parkinson’s disease also came before the public eye recently in the movie “Love and Other Drugs,” starring Anne Hathaway and Jack Gullenhaal.

In the movie, Hathaway’s character has early onset Parkinson’s. Harrison notes that one of the scenes involved members of a real-life Parkinson’s disease support group.

A California native, Harrison, 64, was working as a family, marriage and children’s therapist in Oregon, when she learned in 2003 that she had Parkinson’s disease.

“When I was diagnosed with P.D., I had been very active, walking in marathons. I ate healthy, took care of myself,” Harrison said.

Every year for many years, she’s taken an annual trip with friends to mountain ranges for camping and hiking trips, and once backpacked in Italy.

Harrison said she was trying to protect herself from heart disease, an illness that runs in her family.

“When Parkinson’s disease came walking in the back door” it took her by surprise, she said.

In the year prior to her diagnosis, she had been sitting at her computer one day, when she “reached over to tap the mouse twice, and I couldn’t make my finger move,” she said.

Later, a friend noticed that Harrison’s right arm didn’t swing when Harrison walked.

Harrison went to a doctor, who ruled out multiple sclerosis and a stroke as causes, and left it at that.

“I forgot about it for a year,” Harrison said.

But by the spring of 2003, she said, “I was getting stiff. Things were going on with my body.”

A new neurologist gave her the diagnosis, and it was confirmed by a second opinion, she said.

“It’s a hard disease to accept,” Harrison said.

“I think there’s still a little part of me” that doesn’t believe it, she said.

She said she’ll have days where she feels so well that she’ll think, “I don’t have Parkinson’s — I feel so good!”

This past August, Harrison took her traditional annual trip with her friends. They hiked on Orcas Island, one of the San Juan Islands off northern Washington.

Harrison takes medications four times a day to control her symptoms and sees her neurologist regularly.

She said that without the medicine, her body would be stiff and she’d feel unfocused, “wondering what to do next.”

Harrison has practiced yoga for more than 30 years and says that helps her, too.

Several months ago, she fell down the stairs at her house and didn’t harm herself, she said. She thinks the yoga saved her.

Harrison just lay for a minute at the bottom of the stairs and reassured her 6-year-old granddaughter, Kate, who was there.

“Thirty minutes later we were doing yoga,” Harrison said.

Harrison is a volunteer teacher of yoga at her church, the Unitarian Church of Baton Rouge on Goodwood, giving free classes at 10 a.m. on Tuesdays and 5:15 p.m. on Wednesdays.

One of the symptoms of Parkinson’s for Harrison is a rhythmic motion of her hands, more noticeable in the right hand than the left.

Harrison, who shares her diagnosis with others in the hope of being a resource, said that when she previously taught yoga in Alabama, a class member — whose father had the disease — was stunned to learn that Harrison also had it.

“When you move your hands, that’s not part of the (yoga) pose?” the woman asked.

Harrison recounts it, laughing.

Harrison has faced other illnesses, as well.

In November 2003, seven months after she received her diagnosis of Parkinson’s, she learned she had breast cancer.

She is now cancer free after chemotherapy and radiation treatment.

Harrison said that, in light of her Parkinson’s disease, “breast cancer to me was a blip. It was a speed bump.”

She counts it as good fortune that, because of her Parkinson’s disease, doctors in 2004 also discovered that she had two brain aneurysms, sacs formed by enlargements of weakened blood vessel walls and potentially dangerous.

One was treated through surgery. The other, smaller one is being monitored, she said.

She calls the finding of the aneurysms and the subsequent steps to safeguard her from them the “cherries on the top of the cake of Parkinson’s and breast cancer.”

Harrison now lives in Baton Rouge, where she had previously lived as a young wife and mother, before her divorce many years ago, and where her son and his family now live.

On several occasions, she has reached out to people when she recognizes the symptoms of Parkinson’s.

At the end of a church service once, when members of the congregation were encouraged to hold hands, Harrison held hands with a woman whose hand was shaking.

Afterward, she carefully asked the woman’s husband if his wife had Parkinson’s.

“He said, ‘Yes, would you please go up and talk to her?’” Harrison remembered.

“She had been diagnosed a month at this time,” Harrison said.

Harrison invites people with Parkinson’s disease and/or their loved ones to contact her at her e-mail address, dcarolha@comcast.net.

Another local resource is the local Baton Rouge Area Parkinson’s Disease Support Group that meets from 1 p.m. to 3 p.m. on the third Thursday of every month, except June and December, at the East Baton Rouge Parish Bluebonnet Regional Branch Library, 9200 Bluebonnet Blvd.

For more information about the support group, call Lee Mazzoli, at (225) 275-8549.

General information about clinical research for Parkinson’s disease can also be found at http://www.PDtrials.org or by calling the Parkinson’s Disease Foundation, at 1-800-457-6676.

In a recent yoga class, Harrison instructed her students to stand up, straight and tall, in the “mountain pose.”

“Imagine roots from the bottom of your feet going into the earth. If someone came by, they couldn’t push you over,” she said.

1. The average time it takes for a drug to be developed and approved is:a. 6 months to 1 yearb. 1 to 2 yearsc. 3 to 5 yearsd. 10 to 15 years

2. The percentage of clinical trials that are delayed at least one month because of the lack of clinical research participation is:a. 10 percentb. 40 percentc. 25 percentd. 80 percent

3. The percentage of people with Parkinson’s who participate in clinical studies is estimated to be:a. 20 percentb. 10 percentc. 5 percentd. 1 percent

4. The primary motivation behind clinical research participation for a person with Parkinson’s is:a. a doctor’s recommendationb. knowing it would help the medical communityc. access to new medicationd. all of the above

5. Most people with Parkinson’s learn about clinical studies through:a. their doctorb. support groupsc. the Internetd. other people with Parkinson’s

6. How many phases are there in the typical drug development process?:a. sixb. fivec. threed. four

7. A clinical research participant may discontinue participation in a study:a. whenever the individual wishesb. only if there are medical concernsc. only if the study is halted by the sponsord. only with authorization with the individual’s physician

8. A clinical study informed consent form describes:a. potential risks and benefits of a studyb. the purpose of the studyc. the procedures involved in the studyd. all of the above

Parkinson’s Clinical Research Participation Quiz answers1. d. It takes an average of 10 years to 15 years for a drug to be developed and approved.

2. d. Eighty percent of clinical trials are delayed at least a month because of the lack of clinical research participation.

3. d. It’s estimated that 1 percent of people with Parkinson’s participate in clinical studies.

4. d. A doctor’s recommendation, knowing it would help the medical community and access to new medication are all strong motivations behind clinical research participation.5. b. Most people with Parkinson’s learn about clinical studies through a support group.

6. d. There are usually four phases in the typical process of developing a new drug.

7. a. An individual may discontinue participation in a study at any time, whenever he or she wishes.

8. d. An informed consent form for a clinical study describes all of the answers given — the potential risks and benefits of a study, the purpose of the study and the procedures involved in the study.